Imagine ME

May 12th is M.E. Awareness Day. Imagine…

But I can’t. I can’t imagine what it’s like to be ill for six months; a year; ten years. To be lying on the sofa, day in, day out; to ask someone else for everything I need. I can’t imagine what it’s like to have to think about every movement I make, to plan each action, so that next time I need to go the toilet I have just enough energy to be able to get off the sofa and get to the bathroom. I can’t imagine what it’s like not to be comfortable sitting up in my armchair reading a book. I can’t imagine what it’s like to be so sensitive to noise that I can’t listen to music. I can’t imagine what it’s like.

I can imagine I’m skiing in the sunshine in Italy. I can imagine I’m running through the park. I can imagine I’m going to work, to the job I love. I’m meeting friends in a bar. I’m going to the cinema. I can imagine all that. To lose all that – I can’t imagine what it’s like.

But that is what it’s like for someone with M.E.

I’m caring for someone with M.E. My daughter. She had that life, the job, the friends, the home, the independence she worked so hard for; now she spends every day on the sofa in my home. She’s cheerful, she’s brave, she’s working hard to regain some of that life she had before. She’s a hero.

The disease is not properly understood, neither scientifically nor socially. The name M.E. (myalgic encephalomyelitis) itself is contested; the NHS use the term CFS (chronic fatigue syndrome) instead. Scientists and doctors don’t understand it; some current thinking models M.E. as an immunological/neurological disease – a failure of the immune system. Socially, it’s a disease that friends and family struggle to come to terms with. Until I lived with a person suffering from it, I didn’t realize how much effort it took out of them just to have the briefest of conversations with me. Some people don’t believe that M.E. exists at all. Some people believe “it’s all in your head” (maybe they haven’t seen some of the physical effects of the disease – the pale complexion, the dark circles under the eyes, the skin problems). I still struggle to talk to people about the illness. I can’t explain how disabling it is, and I find it embarrassing and painful to talk about.

I’m trying to make some sense of the disease in this way: failure of the body’s immune system in an ill person means that their energy system isn’t working properly. That puts huge pressure on them physically and mentally. Their body hasn’t got the power that well people take for granted, so for them, doing the most ordinary things like sitting up is hard, and overdoing things has awful consequences. Coping with that huge loss of energy puts huge pressure on mentally.

Imagine what it would be like, to know that presently there is no known cure for the disease you’re suffering from, no remedy for your symptoms, no idea when you might be able to get up off that sofa. Imagine.

Thank you for sharing this. I have ME/CFS, before I had my illness if someone had asked me or had said to me what you said in your first paragraph, I would have struggled to imagine what the illness could be like. I wish you daughter all the best with her recovery.